Design of the Nephrotic Syndrome Study Network (NEPTUNE) to evaluate primary glomerular nephropathy by a multidisciplinary approach

Kidney Int. 2013 Apr;83(4):749-56. doi: 10.1038/ki.2012.428. Epub 2013 Jan 16.

Abstract

The Nephrotic Syndrome Study Network (NEPTUNE) is a North American multicenter collaborative consortium established to develop a translational research infrastructure for nephrotic syndrome. This includes a longitudinal observational cohort study, a pilot and ancillary study program, a training program, and a patient contact registry. NEPTUNE will enroll 450 adults and children with minimal change disease, focal segmental glomerulosclerosis, and membranous nephropathy for detailed clinical, histopathological, and molecular phenotyping at the time of clinically indicated renal biopsy. Initial visits will include an extensive clinical history, physical examination, collection of urine, blood and renal tissue samples, and assessments of quality of life and patient-reported outcomes. Follow-up history, physical measures, urine and blood samples, and questionnaires will be obtained every 4 months in the first year and biannually, thereafter. Molecular profiles and gene expression data will be linked to phenotypic, genetic, and digitalized histological data for comprehensive analyses using systems biology approaches. Analytical strategies were designed to transform descriptive information to mechanistic disease classification for nephrotic syndrome and to identify clinical, histological, and genomic disease predictors. Thus, understanding the complexity of the disease pathogenesis will guide further investigation for targeted therapeutic strategies.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Age Factors
  • Biopsy
  • Child
  • Cooperative Behavior
  • Genotype
  • Glomerulonephritis* / epidemiology
  • Glomerulonephritis* / genetics
  • Glomerulonephritis* / pathology
  • Glomerulonephritis* / therapy
  • Glomerulonephritis, Membranous / epidemiology
  • Glomerulonephritis, Membranous / genetics
  • Glomerulonephritis, Membranous / pathology
  • Glomerulonephritis, Membranous / therapy
  • Glomerulosclerosis, Focal Segmental / epidemiology
  • Glomerulosclerosis, Focal Segmental / genetics
  • Glomerulosclerosis, Focal Segmental / pathology
  • Glomerulosclerosis, Focal Segmental / therapy
  • Humans
  • Longitudinal Studies
  • Nephrosis, Lipoid* / epidemiology
  • Nephrosis, Lipoid* / genetics
  • Nephrosis, Lipoid* / pathology
  • Nephrosis, Lipoid* / therapy
  • Nephrotic Syndrome* / epidemiology
  • Nephrotic Syndrome* / genetics
  • Nephrotic Syndrome* / pathology
  • Nephrotic Syndrome* / therapy
  • North America / epidemiology
  • Phenotype
  • Pilot Projects
  • Predictive Value of Tests
  • Prognosis
  • Prospective Studies
  • Registries
  • Research Design*
  • Risk Factors
  • Surveys and Questionnaires
  • Systems Biology
  • Time Factors
  • Translational Medical Research / methods*